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December 03, 2012

Aiden Gallagher: Youth Takes on the Cruel Mystery

Aiden Gallagher was 11 when she was diagnosed with lupus, after a spider bite triggered symptoms of joint pain, fatigue, and a rash that covered her nose and cheeks. In the eight years since, she has faced numerous health challenges, many debilitating. But she has used her experiences to raise awareness about lupus and improve the lives of others who live with the disease in her community and around the country, as an ambassador for the Lupus Foundation of America.

When Aiden, now 19, was first diagnosed, she was quickly treated with heavy doses of chemotherapy and other strong medications such as steroids to suppress her overactive immune system. The steroids caused her weight to balloon from 82 to more than 150 pounds over one summer. The treatments eventually began to affect her brain, nervous system, kidneys, and bones, to name just a few.

“Lupus just took over my life. I could no longer do the things I loved to do,” she says.

Once an avid softball player, she was forced to give that up as the disease progressed. Aiden suffers from central nervous system involvement, and when her school could not accommodate her special needs, the family decided to homeschool her.

Since her diagnosis, she has been hospitalized more than 100 times. More recently, she experienced serious seizures while away at college and was alone for more than 24 hours before someone found her and brought her to the hospital.

Despite the difficulties, Aiden, now a freshman at Dutchess Community College in Poughkeepsie, N.Y., remains a fighter.

Because her chemotherapy treatments made her feel cold, she launched a project, Blankets for Chemo, to deliver blankets to children in local hospitals who are undergoing chemotherapy for diseases including lupus.
While undergoing chemotherapy herself, Aiden became friends with another young girl with lupus, Una-Marie. Together, they vowed to do whatever they could to educate the public about lupus. They contacted the Lupus Foundation of America and helped launch the first official lupus awareness bracelet with the inscription "Someone You Know Has Lupus.” The girls were named honorary ambassadors for the Foundation and the bracelets became a worldwide symbol for lupus. When Aiden turned 16, she decided to host a sweet 16 party and raise money for the Foundation and Hospital for Special Surgery in New York. The event raised more than $16,000 for lupus research, education, and awareness efforts.

Last month, Aiden participated in a panel at a Lupus Foundation of America event in Washington, D.C., along with three-time Olympic gold-medalist Shannon Boxx and Dr. Susan Manzi, to speak about the cruel and devastating impact of lupus.

Aiden (center) with Shannon Boxx (L) and Dr. Susan Manzi in front of the Help Us Solve the Cruel Mystery™ tour bus.

“For me, life with lupus means never knowing what each day will bring,” she said. "My future has always been the most important to me and my biggest fear is that lupus will stop my dreams."

Join Aiden and Help Us Solve the Cruel Mystery™. Find out how you can get involved at www.cruelmystery.org.

11 comments:

I'm so impressed by you. I am 38 and my story in regards to symtoms and treatment is quite similar to yours except for that I'm 39. I've been living with lupus since 2002...heart failure and kidney loss of function to boot. My onset was after a very serious case of Epstein-Barr virus. I lived with my best friend at the time and we both tested positive but it didn't affect her and I could barely make it accross the room...hello lupus. I would love to commend you on being so brave. Let me know if I can do anything for the cause!!

You're story warms my heart and gives me hope. I was diagnosed in August and felt deeply depressed and confused. There is so much I want to do in regards to helping others but I am not sure where to start. Thanks for sharing this and good luck with school. You are an inspiration! 203

You touch my heart. I have been diagnosed with Lupus for only 3 years now. I am 40 and am struggling so hard with things. I am glad to hear how it is hard but can be overcome with the right mind set. I have trouble being treated since I can not have steroids due to Pulmonary hypertension and non alcoholic cirrhosis. You are a true inspiration. Thank you so much for sharing your story. Its good to hear there are people who understand what our situation is and our days seem not to be our own.

Thanks for sharing your story. I have been living with Lupus since I was 16, I am now in my 40's. As@you can imagine I have been through a lot just like you - including a long remission which ended recently. My Lupus came back with a vengence this time with heart failure, kidney failure on top of all the fatigue and joint pain. But the good thing is that my desire to help others@wwith Lupus and their care givers and loved ones has increased tenfold as well. So thank you for the inspiration. You got me fired up and ready to do whatever I can to combat this cruel mysterious diseaase.-

Your a great inspiration. I am 53 and after going to hell and back for over a year I was diagnosis this past summer. I have kidney, heart, joint, and lung involvement. Frustated often because we don't look sick most of the time. Not letting this define me. I call myself Lupus Nija. Thanks everyone for sharing!! Kelli

I wish more attention was brought to such videos like this: http://www.youtube.com/watch?v=7xPmR8j4plw

The U.S. is such a suppressed nation, we need to open our minds to natural cures that exist around us. I'm not saying it's certain, but I wish you'd see and hear about more things like this, and not drugs that curb one ailment, but create other problems. It's all poison.

Aiden - You are an inspiration and God Bless you! My boyfriend's daughter is 13 and just diagnosed about a month ago. She's on her second hospitalization. Lupus has attacked her kidneys and is playing with her central nervous system. She is terrified as are her parents. I've been quietly reading up on Lupus, but its hard as the non-parent to know when to help and when not to. We live in the Twin Cities and there is no support group here. As you feel healthy, I would love to connect with you and have you connect with this kid. She would so greatly benefit from having someone close to her age who, from what it sounds like, has suffered many of the things she is. I never knew until now what a horrible, unpredictable disease Lupus is and my love and comfort to all who suffer. I am on Facebook.

I also got lupus when I was 11, but that was in 1974 and at that time they didn`t know so much about lupus here in Noway, practical nothing.So I got diagnosed when I was 16. I have also an artificial joint in my left knee and my hands are also affected (in 1991). I have also an CNC lupus. I also work agains lupus cause I`m a leader in a lupus group in my county here in Norway, has been since 1996. I think it`s great to read about Aiden and her work to raise awareness agains lupus. And I didn`t know that it was her who created our logo:Someone you know has lupus. Great, thank you for all you support.

I am glad to came across this blog. I had Lupus last year May. But I believe I had it since year 2000. I had kidney failure and heart problem when 1st diagnose. Now, I am still on medcation with 2 predni/day. Here's my blog,http://lupus-beat-it.blogspot.com/

I am glad that I have joined this website. To see others going thru the same thing that I am and not feel so alone on this. This disease is a horrible thing to have and I wish they could find an actual cure for it. I have been on very strong chemo for the past 6 months and they have tried just about every med they can possibly think of to treat me. I have been in the hospital 26 times in a year for a week at a time. I am no longer able to work nor do normal every day activities due to this illness. Its nice to see so many people sharing their stories and trying to make this illness more aware to the public eye. Alot of people have no idea what it is or how it effects our lives. Like everyone else I stay stronjg and just keep hoping for the best.

I've had a hard road to being diagnosed. I came through with Lupus on my 1st blood test along with Lyme (couldn't figure out why the fatigue was so bad I was falling asleep driving my car to work). After that, it didn't show in subsequent tests but still had 6 out of the 11 symptoms which is also a diagnosis tool. Finally found a doctor that believed me and my primary doctor. She gave me meds and in about 8-10 weeks my symptoms started to decrease in intensity. So I also have COPD/emphazema, fatty liver, depression, irritable bowel (this one is fun - LOL) and I can't remember what else.

From the Lupus, I have joint pain, loss of memory (short term memory), can't be out in the sun too long or I get a rash and can't be in the cold to long - my hands turn white as a sheet.

I've been out of work since June. Just can't do it - I have a very stressful job and it'll make things worse.

Lupus Foundation of America

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Have questions? Email us at yan@lupus.org